Yeah, talking about my calf again. No, I do not have a young cow, I have a spastic calf. It is agonizingly spastic. Not so much that I can’t do anything, it just really nags me most of the time. I’ve talked about it before, so I’ve conveyed how it is the most annoying part of my MS, no?
And therein lies the problem. It is MS, a neurological problem. A nerve problem. And the treatment options for nerve issues aern’t all that promising (ask my buddy with CRPS about that). My neurologist basically gave me three options:
1.) Muscle release. A surgeon cuts you open and manually releases your muscles. NO THANK YOU at this point at least!
2.) Get a baclofen pump installed. I ASSURE YOU I AM NOT A CYBORG* – so no, no thank you on this one.
3.) Take a baclofen orally. YES, yes, yes, omg yes! Given the options this was the only acceptable one to me as it is non-invasive.
Obviously if you’ve been even skimming my blog you know that I am using baclofen orally, and it is working pretty well. Taking it orally at this point is the better option, as when I receive my Tysabri infusion as I did last week or so, the calf spasticity usually goes away – in most cases. I can drop or at least decrease the baclofen until it’s needed again. Couldn’t do that with a pump.
After this treatment, though, the spasticity is still noticeable, however it has decreased out of the agonizing stage. Which is good. However, it is kind of scary that it is still around even if barely. Perhaps I am more in tune with it this time? Maybe the dose of Tysabri wasn’t as good this time? I’ve had pretty mild ride with Tysabri. The biggest side-effect I’ve experience – and this was early on in treatment – is the lethargy after getting dosed and sleeping away the rest of the day. Otherwise all the other effects, of which I know, are completely desired. Keep ’em coming! Especially since there doesn’t appear to be an exit strategy with Tysabri that doesn’t involve luck or a big relapse.
Here is a stretching program from youtube from Trevor Wicken, when he points to the spot on his calf, that is exactly where my calf feels tight.
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I’m not sure if he’s an MSer or not, but he obviously knows his stuff. I’m impressed. After I get my calf stretched out, I’m gonna try the whole body stretching if my kids allow it. So probably not.
*Nod to monsters versus aliens.
I received a piece of mail from Blue Cross Blue Shield of Illinois this week. And they’ve approved my Tysabri treatment as medically necessary.
WELL NO DUH!
I won’t be posting a version of this document to preserve my privacy, but I assure you, the bureaucrats sent it to me.
Was this supposed to make me feel better?
Holy Jeeze. The Bureaucracy of this country…perhaps world…is just too damned much at this point. The last thing I want to worry about is my insurance company denying my treatment because they deem it not medically necessary. What is to prevent them from taking such a stance? I’m costing them a bunch through no fault of my own. Isn’t that for what is health insurance?
Yes, I know they have to do it because of lawyer and whatnot. I don’t have to like it.
This may be the most obvious problem for me that arises from having MS. And it is almost always annoying. Sometimes are worse than others. At times, usually about a week after my Tysabri infusion, my calf spasticity will lessen greatly, almost to the point I forget about it. Then there are times, like the weeks before my last infusion, where it is down-right excruciating. I’ve found that stretching my calf by placing a roller or rolled up towel under my foot then leaning forward with the other foot helps…a lot. But the calf spasticity remains. Stretching does not completely relieve the agony. Having my wife massage the exact spot on my calf does bring great relief, but it is also short-lived. Then there is the medication, which seems to be specifically made for my spasticity since it helps so much. The drug is baclofen. Apparently abuse of baclofen is a problem in that Olympic cheating country (Think OAR), which makes me think those motherRussians have stomachs of iron. As I’ve never had to take food with medication to avoid an upset stomach, but with baclofen it is mandatory for me. That ‘forced’ eating along with the decrease in miles peddled have resulted in weight gain, which sucks, but as always I am digressing.
Have spasticity problems, here is where I got the roller idea. It also includes four other stretches for common spasticity problems. Stretch it out my fellow MSers!
*And have I mentioned how much I hate the word spasticity? I makes me think of spastic in terms of people who have very poor emotional control.
And try searching for spastic calf if you’d like an unrelated laugh.
I did the empower thing last night. I even had the lunacy to do the lancing and collecting on my own, while my wife was working. Which I believe was a mistake, as I don’t think I got enough blood into the container.
Plus I got light headed so I wasn’t thinking clearly when I was performing the collection. If I have to do it again, I’ll definitely allow my wife to do it.
The light headedness along with an out of control brood really made it tougher than it should have been. But at least I had the courage to do it myself…twice. I absolutely loathe needles of any sort.
Three needle sticks today. Shy of the record four sticks. Wasn’t terrible, even with the needlephobia.
That was fun. Veins in my left hand is the winners it seems.
As I mentioned before, my infusions happen every two months/sixty days. Most of the time I’ll get a bit worn down a couple of weeks before being infused with Tysabri, but this time the spasticity in my calf was intolerable for around the last few weeks prior to infusion. Deep thought was off the table for that period of time too.
Getting infused with that sweet Tysabri
Already my calf is getting less spastic. It isn’t better, but give it a few days and I’ll be off my baclofen and life will be way easier. I’ll be able to think too – hopefully – I’ve still got three kids in the house including a two-year-old gone wild.
The nicest part was my wife getting my appointment moved from 14:45 to 10:30. That means I get to have an awesome hospital lunch. Yeah, it may be hospital food, but at least it is food to have during my infusion. I was gonna stop and get a big old authentic steak burrito if my appointment had not changed. At least I didn’t have to stop to get food.
And for a bonus, my first public video on youtube: I apologize for the terrible audio. Go easy on me.
Yes, the second month of this blog’s second incarnation. Woot. Although I think that three posts per week has reduced the quality of the content on this site, IMO. It is OK, as the blog was new (again), and I needed to get it filled with content. And I touched on the basics of Multiple Sclerosis that most directly affect me. I hope it is coming across.
I’ll be posting a bit less at this point. Probably once a week and maybe once on the weekends. Still figuring it out. I’m trying to find a way to post in a meaningful way yet not let it consume all my free time. Three times during the week was consuming my week – not easy when you’re the primary caregiver to three children..and have MS. So we’ll see what a new schedule brings.
Attack, episode, exacerbation, relapse.
I do dislike the last term. Makes it seem like you’re dealing with illicit drug problem
All of these terms are used to describe an MS event. And I’ll lead off with uncertain to describe episodes. If you’re having an attack, your brain is most likely being damaged. Don’t worry, it is not as bad as it seems. You think brain damage and you think of someone who was in a seriously traumatic automobile accident or a major workplace mishap. No, it likely won’t be that. We with MS get our brain damage in much smaller doses. Micro doses if you will. and that is why medication to stop progression is so damned important in my less than humble opinion. But, as always, I digress.
Like I started, exacerbations are uncertain. Anything but. You could have an episode, like my first, where I thought I was having loss of equilibrium in my ears as my balance was slightly off. It was such a problem I even went to a doctor. I always think he knew but didn’t want to disclose MS as I didn’t have insurance at the time. I was starting a new job and insurance lapsed without the COBRA coverage. Young and dumb. It was nothing but time to allow that episode to heal away. And that it did – seemingly – resolve completely. I had no idea at the time of my Multiple Sclerosis. I thought it was a bad earache
My second attack was quite the eye opener. It was a fuzzy time, as my memory seems to have suffered a lot in that episode. I remember it mostly as being bedridden as I was so off with my balance. My vision doubled. Not in better eyesight, as in I was seeing double everything. Take my advice, don’t drive in that state.I knew at this time I had MS, yet had never knowingly experienced such a serious exacerbation. When it occurred – and it hit hard – I was more capable of dealing with what was happening to me. Good thing too, I was absolutely out-of-action for about a month. I ended up taking a three month sabbatical from my job because of that MSBS. Thank you FMLA.
As I mentioned I had already known I had MS and was receiving the care of a MS neurologist. He put me on a steroid, Solu-medrol. I’ve mentioned it before, so I won’t go into too much detail other than IT SUCKS. Especially when you have to drink it. DO NOT TAKE THAT OPTION. And expect to put on some weight. Perhaps a lot. I’ve never experienced a hunger like that,.
So hopefully I’ve explained what an MS attack can be like. There are extremes. From barely noticeable attacks that you mistake for something else to jaw-dropping, life stopping, making your body unusable for anything but life-support exacerbations that are breathtakingly momentous. (that last sentence kind of reads poorly, sorry)